I have SFN-Do You? - Neuropathy Message Board

will54 · 08-17-2009, 08:48 PM

Hello to All,

I have SFN and have been dealing with it for several years now. I have bad days, like today, and then I have not so bad days. The not so bad days seem to come in the warm to hot months.
Today was a bad day due to my left leg, hurt from just above the knee to the top of the ankle. Thought I would have to get my cane out if it stayed the same. Nearly fell several times.
I take several medications, a cocktail, not just one and they seem to hold me some what. I have tried to stop some of the medications only to find that they were doing more than I thought.
Let's have a conversation.

Will

byoung6 · 08-18-2009, 04:56 AM

Will, I have SFN also, I had to chuckle when I read your post, I had the same exact day yesterday and have pretty much been up all nite with burning legs. I did break out my cane yesterday or I would have fallen. I was dropping my whole left leg from the knee down all day. I do the same thing, I get thinking I just can't take all these meds and then I try to do without a couple of them and get reminded of why I take them. Especially my tegratol, if I don't take it its like being electricuted and stung by a swarm of bees. Keeps my face from being struck my lightening pains also. I started knowing something was wrong about 4 years ago, its been downhill since then, I am hoping that it will stop getting worse, seems like I lose alittle groung every few months. Hope alot of folks jump in here, there are alot of SFN folks on the boards.
Barbara

will54 · 08-18-2009, 09:35 PM

Hello Barbara,

Thank you for your reply. Sorry you have this disease and hope it doesn't get worse for you.
My doctor has told me mine will get progressively worse. I will continue to fight back against it. It may hurt me, but it will not control me.

Keep fighting SFN and don't give up!

Will

byoung6 · 08-18-2009, 11:39 PM

Will,
I haven't been told if mine will continue to worsen or not. they really don't know why I have it in the first place, closest they can come is, well your pre-diabetic (which I take meds for) but I can't quite believe that pre-diabetic would do this, for goodness sakes I'm not diabetic yet and 2 years ago when they told me that, I got right with the program to to keep my BG under control and according to the tests have done very well. I think of myself as still in the diagnosis stage since I really don't have any answers just alot of "well, its not that " I hear alot of folks say that they tested neg for stuff a along time before they tested positive. So, who knows. Sometimes I don't care. Then things will get worse and I'll not get back what I lost, then there I am again wondering why, when will this at least stop getting worse. The worst part is looking at my husband and saying I'm sorry all the time, he's great but, I know he grieves as much as I do for what we don't get to do anymore. I was a real ball o' fire back in the day! Really I could be a total pain in the ***, now I see that, not everything is bad about finding yourself vulnerable, makes you think about who you have been and who you should be. I hope I'm a better person.

will54 · 08-20-2009, 06:47 PM

Barbara,

I Have had totally different days since last writing. Isn't SFN fun?
No problem in getting around and only shoulders have been talking.
This is what makes people think that we are insane or stupid. Thankfully my wife understands and I have a doctor that treats SFN. Otherwise I would be considered insane.
Keep up the fight against SFN!

Will